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Old 05-05-2010, 02:03 PM   #1
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taminye HB User
Rls help please

I am also have really bad RLS and want to know if anyone out there has found anything to take teh pain away. I have tried Mirapex, Ropinirole, and am now going to try Sinemet. I am ready to get commited to a mental ward for lack of sleep. My legs are killing me and I have to soak them every nite in hot water in the tub to try and get them to calm down. I pray someone reads this and gets back to me w/ help......I need all the help I can get!!!!!!

Last edited by moderator2; 05-05-2010 at 09:09 PM. Reason: please do not post your email address

 
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Old 05-06-2010, 06:59 PM   #2
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Re: Rls help please

Your legs are painful? I didn't know RLS could cause pain. Mine are torture, but it's from the unrelenting need to move them hour after hour after hour.

I wonder if you or your doctor have checked any medications you might be taking. RLS is a side effect for several of them. Antihistamines for example are very common triggers for people prone to have RLS. Antihistamines are found in over-the-counter sleep medications too because they often make people drowsy, but they trigger RLS for many of us.

Caffeine is also problematic for some of us. I've read that caffeine can actually calm RLS immediatly after drinking it for some people, but 8 hours later, when trying to sleep, the RLS will start. The effect of triggering RLS is not immediate, in other words.

I've battled RLS for most of my adult life. During one period of time, I was completely free of it. Then it started up very suddenly. I went on a hunt, trying to determine if something was causing it. Lo and behold, I discovered the cause. I'd started eating a very strong coffee flavored ice cream (I don't know if I'm allowed to mention the brand so I won't). I loved it and was having a big bowl every day. When it occurred to me that the coffee possibly had caffeine, I stopped eating it. My RLS vanished. It was amazing because I felt no effect at all from the caffeine content after eating it, but come night time, those legs would start, well, you know the story. The day I stopped having the ice cream, the RLS disappeared.

I've been on several medications that have triggered it too. Not all doctors are aware of this, but it's well documented. Something else that triggers it for me is the spice ginger. Glutamates are also a problem for me. Of course, sometimes you can't find a trigger, I've been through years of that too. Don't give up, Honey.

 
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Old 05-08-2010, 06:35 PM   #3
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getw3ll HB User
Re: Rls help please

Yes RLS can be painful as it gets more severe, mine can be.

Triggers I know about: dehydration (drink tons of water during the day), caffeine, chocolate, alcohol, foods you are allergic to, meds or supplements that boost seritonin, being tired unfortunately for us makes it worse, sedatives like xanax, anahistamines.

Get checked for you iron level, mine is on the low side of normal, but supplementing still helps me a ton. Mega Foods Blood Builder is a great gentle on the stomach food based iron supplement. I find that it is cheapest on Amazon. It takes a while for iron to work, it needs to build in the brain, so if your blood tests shows you are low, don't give up on it.

Other supplements thought to help: Folic Acid, Vitamin A, NADH (this works great at night for me, will also prevent or stop attacks if taken in the evening), SAMe (don't take if you are bi-polar)

Get checked for sleep apnea, lack of sleep is another one.

Meds: Requip or Mirapex and Neurontin or Lyrica. I am taking 2 mg Requip with 50 mg Lyrica nightly, works very well. Some generics for Requip work better for me than others.

Last edited by getw3ll; 05-08-2010 at 06:42 PM.

 
Old 05-17-2010, 06:05 AM   #4
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alaska3355 HB User
Re: Rls help please

For me, I discovered a gluten sensitivity. I am still on mirapex, but things are so much better for my legs and body without the gluten. I am sleeping better with far less "dancing" around the bed. I have heard of others with this problem.....you might want to give yourself a gluten free trial.
Good luck!

 
Old 05-27-2010, 12:32 PM   #5
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Re: Rls help please

I was diagnosed with a nondescript seizure disorder before restless leg really became a thing. I went through nightmares trying to figure out how to fix it and about a year ago took a neuro-transmitter level test. This is a test that was developed in Germany in the 1940s but is just now making it into the states. from this test I learned that i have a neuro-chemical imbalance. The test actually tells you what supplements to take in order to correct the imbalance - for me its mostly omega 3 and 5htp. I highly recommend it to anyone! All you have to do is spit in a tube for two days.

I owe my life to this. I am almost a year shake free!!!!

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Old 05-28-2010, 12:11 PM   #6
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getw3ll HB User
Re: Rls help please

can you comment on where you got the test?



Quote:
Originally Posted by flynikitta View Post
I was diagnosed with a nondescript seizure disorder before restless leg really became a thing. I went through nightmares trying to figure out how to fix it and about a year ago took a neuro-transmitter level test. This is a test that was developed in Germany in the 1940s but is just now making it into the states. from this test I learned that i have a neuro-chemical imbalance. The test actually tells you what supplements to take in order to correct the imbalance - for me its mostly omega 3 and 5htp. I highly recommend it to anyone! All you have to do is spit in a tube for two days.

I owe my life to this. I am almost a year shake free!!!!

 
Old 05-30-2010, 05:42 AM   #7
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flynikitta HB User
Re: Rls help please

I contacted the company (use the link in my previous post). They have a list of Doctors by area who work with them and can read the test. I started calling doctors in the list they gave me until i found on willing to order the test for me. She ordered the prescription for the test. it comes in the mail then you mail it back to the company. The results came back about two weeks later and the doctor used the results to tell me which supplements to take. I went back to that same doctor once more for an adjustment (I'm really sensitive to everything and her first recommendation made my symptoms worse) It took about a week or two of trying for the right combination but i have been shake free ever since.

 
Old 05-31-2010, 11:51 AM   #8
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getw3ll HB User
Re: Rls help please

Thanks so much for the info.

Could you post what supplements made your symptoms worse, and which
ones helped?

Thanks.


Quote:
Originally Posted by flynikitta View Post
I contacted the company (use the link in my previous post). They have a list of Doctors by area who work with them and can read the test. I started calling doctors in the list they gave me until i found on willing to order the test for me. She ordered the prescription for the test. it comes in the mail then you mail it back to the company. The results came back about two weeks later and the doctor used the results to tell me which supplements to take. I went back to that same doctor once more for an adjustment (I'm really sensitive to everything and her first recommendation made my symptoms worse) It took about a week or two of trying for the right combination but i have been shake free ever since.

 
Old 06-01-2010, 07:43 PM   #9
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flynikitta HB User
Re: Rls help please

In regards to which supplements helped and hurt, thats a tricky question. From what i understand it will be different for everyone and I am very sensitive to everything. I dont remember what messed with me, but some that have really helped are: 5htp and omega 3 (the only two i currently take regularly), CoQ10, taurine, theanine, CalMag and a few others. I also find that if i'm shaking melatonin helps me sleep, but if i'm not shaking it causes me to shake (though eventually helps me sleep). Essentially, what you are looking to do is balance your neurotransmitters. Different supplements effect the production of different transmitters so it all depends where your imbalance is. Prior to taking the test I played around with the supplements above with no bad side effects, like a trial and error basis. They may take a few days to kick in. I also find that if im really shaky a bit of alcohol goes a long way. It works like a muscle relaxer. In order for this to be effective, I only drink when i shake, otherwise i would need to drink too much to get the desired effect. One last one...there is a supplement sold at Whole Foods called "brain boost" I remember feeling good when taking that as well.

Hope this helps and feel free to ask for more info. This has done me more good than i can say and i'm always happy to pass it on.

 
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